Counselling services, along with self-testing kits, are being used in many parts of Africa to encourage young people to check their HIV status.
Photograph: David Levene

At the start of the millennium, a positive HIV test was equivalent to a death sentence. Average life expectancy after diagnosis was just one to two years for those in low-to-middle-income countries, and one of the main reasons to get tested was to have time to prepare for death. But now the scales have tipped. For the first time since the start of the epidemic, more than half of people living with HIV and Aids (PLWHA) are having treatment.

The number of Aids-related deaths has almost halved since 2005 and in high-income countries, the life expectancy of PLWHA comes close to that of people living without the virus.

Treatment is working, but stubborn challenges remain. People continue to be infected, around one million still die from the virus every year and while 53% of PLWHA now have access to treatment, a significant number still do not. At present, the global HIV community of researchers, policymakers and healthcare providers is working towards UNAids’ 90-90-90 targets. The targets state that by 2020, 90% of people living with HIV will know their status; 90% of those who are HIV positive will be on antiretroviral (ARV) treatment; and 90% of all people receiving treatment will have viral suppression – where HIV is undetectable.

So what advances in HIV prevention, testing, treatment and care are needed to work towards these targets? This was the central question examined at a seminar organised by the Guardian and supported by Gilead Sciences, a biopharmaceutical company. The event was held alongside the ninth IAS Conference on HIV Science in Paris and hosted an audience of researchers, pharmacists and clinicians.

We wouldn’t have 19 million people on treatment without the help of young people and activists

According to the Global Fund to Fight Aids, Tuberculosis and Malaria, the next stage of the fight begins with key populations – those who are most vulnerable to infection and less likely to be able to access diagnosis and treatment, particularly in the developing world. Key populations are generally considered to be people who inject drugs, men who have sex with men (MSM), transgender people, sex workers and prisoners.

In Thailand, where around half of all new infections occur among transgender women and MSM, community-led programmes are helping to bridge the gap between HIV services and key populations. “The community decides which services are needed to address the HIV epidemic, meaning that services are demand-driven and have the client at the centre,” said Reshmie Ramautarsing, a clinical research physician at the Thai Red Cross Aids Research Centre. “These services aim to be friendly for key populations by offering flexible service hours and a setting that’s free of the stigma and discrimination they often face in traditional healthcare settings.”

Community involvement was also an important step, said Papa Salif Sow, vice-president of programme development and management in emerging markets at Gilead. “We are working in rural Tanzania with local NGOs, the government and the Vatican to test and treat 20,000 people in the community, to train healthcare workers and build facilities.”

The number of people being tested is increasing and adherence to treatment is high. “The project shows the importance of community involvement for increasing access to drugs and viral suppression,” he added.

Peer support has also been shown to reach those who don’t already know their HIV status. In Brazil, where an estimated 830,000 people are living with HIV, the ministry of health is conducting a three-year nationwide rapid-testing project in partnership with NGOs, in which people belonging to key populations are encouraged to take an on-the-spot test in a social or community venue as a means of removing the stigma of seeking diagnosis. To date, 120,000 people have been tested this way.

“Overall, the rate of positive test results was around 2%, but in key populations it was 10%,” said Adele Benzaken, director of the ministry’s department for sexually transmitted infections, HIV/Aids and viral hepatitis. “One of the most important things is that 50% of these people had never been tested before. This shows that we are going the right way.”

The World Health Organization (WHO) recently prequalified the first HIV self-test, meaning that it can be procured by the UN. Using oral fluids as a specimen, the test gives results in 20 minutes.

“People can do it easily and accurately – it’s showing good links to treatment and prevention services,” said Rachel Baggaley, HIV prevention and testing coordinator at the WHO.

There is often stigma associated with going to an HIV clinic to be tested, so it is hoped that self-testing will encourage more people to find out their status. The method has proved popular with men, who are often reluctant to access health services. In Malawi, women have been given self-testing kits to test their partners at home. “Men often reported being coerced into testing by their wives,” said Baggaley. “We took this as slightly negative, but they were pleased. They said they need to be persuaded because they won’t take time off work [to get tested].”

The response to the HIV epidemic had also failed to reach children, who responded differently to HIV infection and ARV treatment than adults, the seminar heard. Even in countries with a higher prevalence of the virus, it was difficult to find children living with HIV and help them access treatment.

“It’s a needle in a haystack situation,” said Nadia Sam-Agudu, a specialist in HIV at the Institute of Human Virology in Nigeria, home to the highest number of children living with HIV, according to UNAids. “We need to find the mothers in order to find the children.”

Considering this barrier, an audience member asked when schools and the Nigerian education ministry should be involved in efforts to reach and test children. While it would be beneficial for schools and government ministries to work together, some on the panel said there was often resistance from schools, parents and other adults due to the stigma associated with HIV being a sexually transmitted disease.

Children in Nigeria can be tested for HIV, but testing is often only available at the discretion of healthcare workers, many of whom are reluctant to do so. “There are healthcare workers who won’t test unless there’s a law, and others still have personal biases against testing people younger than 18 because they think they’re not supposed to be having sex,” said Sam-Agudu.

“We have to work out how to get around that,” said Peter Godfrey-Faussett, senior science adviser at UNAids. “We need to get comprehensive sex education into schools. In terms of transmission, the most risky time is when people leave school. That’s why keeping girls in school for an extra year or two makes a big difference.”

The potential of HIV drug resistance was a common concern raised throughout the debate. In six of 11 global south countries recently surveyed by the WHO, more than 10% of people starting ARV therapy had a strain of the virus resistant to some of the most widely used HIV medicines. “So how worried should we be about drug resistance?” asked Lucy Lamble, global development executive editor at the Guardian and chair of the debate.

The HIV community ought to be alert, but not alarmed, said Godfrey-Fausett, referring to public health impact assessments conducted in several countries by Pepfar – the US President’s Emergency Plan for Aids Relief.

“In Malawi, Zambia and Zimbabwe, they have taken a random sample of people taking ARVs and found that their viral suppression is extremely high, despite the fact that those same countries are beginning to report rising levels of drug resistance. In terms of turning the tide on HIV, I don’t think drug resistance is yet the major threat,” Godfrey-Fausett added.

The panel emphasised that making sure people took their ARVs and ensuring there were enough drugs available would be key to minimising the chances of any resistance developing.

Technology could play an important part in this, said Salif Sow. “In Kenya, for example, patients can receive a text message every morning saying ‘Mambo?’ – ’How are you?’ in Swahili – to remind them to take their medication.”

Faced with the daunting task of testing those who did not know their status and reaching the large number of PLWHA who still did not have access to treatment, panellists were encouraged by the high proportion of young people in the audience. “Young people really got us to where we are,” said Baggaley. “We wouldn’t have 19 million people on treatment now without the activists.

“The younger generation are really stepping up to the mark and demanding governments and donors provide PrEP [pre-exposure prophylaxis] and self-testing.”

The panel agreed that young people and young activists would be key players in the renewed push to end the epidemic and ensure that no one was left without treatment.

This article was amended on 10 August 2017. An earlier version said that “In Bangkok, where around half of all new infections occur among transgender women and MSM...” In fact the reference should have been to Thailand.